19 For this table the

19 For this table the figures relate to 239 cases, as one respondent ticked two boxes and so both answers were captured. Informing Families Consultation and Research Report Parents age at diagnosis In estimating the age of the parents of the child whose disability was diagnosed, the most common age range indicated by professionals for both mothers and fathers was the ’30-39’ bracket Age at time of diagnosis Table 5.41 - Parents age at time of diagnosis Mother Father n= Percentage n= Percentage 10-19 years 1 0.4% - - 20-29 years 26 10.9% 14 5.9% 30-39 years 108 45.4% 87 36.6% 40-49 years 33 13.9% 40 16.8% 50-59 years - - 3 1.3% Missing 70 29.4% 94 39.5% Total 238 100% 238 100% There was an approximately even amount of cases where the child being diagnosed was the first child in the family, and where this was not the case Table 5.42 - First Child in the Family n= Yes No Don’t Know Missing Was this child the first child of the parents? 183 36.6% 38.7% 1.7% 55 Diagnosis given at one time or evolved In contrast to the parent questionnaire where for over half of the children (52.7%) the diagnosis came at one particular time, this was the case for just 19.7% of the children whose diagnosis was described by the professional respondents. A higher number of children had an evolving diagnosis (43.1%) in the professional survey versus 35.9% of cases in the parent survey. 19 Table 5.43 - Diagnosis came at one time or evolved over time Diagnosis given at one time or evolved Did the diagnosis… n= Percentage Evolve over time 103 43.1% Come at one particular time 47 19.7% Diagnosis still uncertain 25 10.5% Don’t know 6 2.5% Missing 58 24.3% Total 239 These findings show that for a large proportion of families the first news involves the communication of a concern or a suspected diagnosis but does not provide the final syndrome name or disability. This is an important indicator that disclosing a disability to the family is a process rather than a one-off event. 113 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 5.3.3 - Setting/Location and People Present The following section of the report describes the setting in which the news was given to the family, and the people who were present. In almost four fifths (77.7%) of cases reported by the professional respondents the news was given to the family in face to face meetings, with only one case reported in which the news had been given in writing and no cases in which parents had been informed over the telephone. Professional that first informed the family Professionals responding to the questionnaire were asked to indicate which member of the staff team had first given the news to parents that their child had a disability. As with the parent section of the report, the most commonly noted discipline that first gave the news was ‘Paediatrician’. This was significantly higher than the next most frequently reported discipline which was ‘Psychologist’. There were a high number of non-respondents to this question, possibly largely due to supporting staff members not having been present at the first disclosure. Table 5.44 - Professional who first gave the news n= Percentage Which member of the team first gave the news? Audiologist 3 1.3% Cardiologist 1 0.4% Consultant 3 1.3% Consultant Anaesthetist 1 0.4% Consultant ENT 1 0.4% Doctor 5 2.1% Eye Specialist (Opthalmologist/Optometrist) 1 0.4% Foetal Medicine Specialist 2 0.8% GP 1 0.4% Genetic Counsellor 1 0.4% Midwife 6 2.5% Neonatologist 2 0.8% Neurologist 3 1.3% Nurse 1 0.4% Obstetrician/Gynaecologist 9 3.8% Paediatric Nurse 1 0.4% Paediatrician 52 21.8% Physiotherapist 1 0.4% Psychiatrist 4 1.7% Psychologist 12 5.0% Public Health Nurse 1 0.4% Speech and Language Therapist 3 1.3% Trainee Paediatrician 1 0.4% Ultrasonographer 2 0.8% Other 1 0.4% Missing 120 50.4% 114